Migraines and Headaches Community
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Familial Hemeplegic Migraine

Does anyone else here  have a diagnosis of Familial Hemeplegic Migraine with aura, ataxia & seizures ?
If so are you on the anti epileptic anti seizure medication?
Reason for asking is its looking more and more like this is what is wrong with me.  Ruling out MS, Epilepsy & Stroke etc.
It certainly does explain heaps and my mother has it also so thats why its familial but not as severe as me. It ticks every single box except maybe one or two symptoms which are more peripheral nueropathitic in nature but then I have read FHM can be caused from an underlying PN condition?  
I am trying to research as best I can. I have not had genetic testing or nerve studies EEG etcdone yet which will probably be next on the agenda but my doctors are fairly confident this is whats happening.
Love to hear anyone else who has this, their diagnosis, journey to diagnosis etc and what meds are on.  What the normal treatment is for this.

It seems to very closely mimick a stroke and what worries me is how to recognise the difference since I am already in high risk for stroke.
4 Responses
Avatar universal
Wanted to add, just got results back from blood works, all normal.  I am not totally convinced its FHM, when Im not having a headache I get muscle weakness, twitching & spasms.  

Please could someone explain how FHM can be diagnosed however it doesnt explain the other stuff?
66863 tn?1203545467
Hi there, I have recently been diagnosed as having Hemiplegic Migraine due to suffering with dreadful neurological symptoms for the past 5 years. I am 51 and was originally diagnosed as having had a Brain Stem CVA at my first collapse in 2003. I was rushed to hospital with right sided weakness, severe vertigo, nausea, hearing loss and co-ordination problems, also problems with thought process which rendered it difficult to have a conversation at times. The main bulk of my symptoms lasted months and months, but all my tests ie. MRI's, TOE, nerve conduction studies, blood tests, were all negative. It was thought i had one of the following MS, ME, Peripheral Neuropathy, Lupus etc, but due to ALL my tests over 4 yrs came back negative, it was decided last November 07, on seeing a different Neurologist, he came up with HM. He is not sure whether it's familial or sporadic as both my parents died 12 or more years ago. I am due to see him again in March so hopefully he will be able to discuss the possibility of doing a blood test to see if this is genetic as my 21 yr old son suffers with dreadful migraine as well. I have been doing lots of research and from what i have read, FHM is caused by a genetic mutation, where as SHM can be caused by head trauma or stroke. I am not medically trained in any way, so please dont quote me on this, it is purely what i have read up on. If you just type in http//:www.geneclinics.org in the search bar it should help.
Avatar universal
Have the docs check YOUR HEART !  Most patients with this type of migraine have a heart issue.

MVP and small holes in the heart can cause migraines-

talk to your cardiologist as well as your neuro doc
Avatar universal
Also get checked for lupus and chronic fatigue sydrome.
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